MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Expand/ Collapse Topic
Replies By
View Topic
BrianP's picture
Replies 1
Last reply 11/30/2015 - 9:27pm
Replies by: jamieth29

Something Ed said in another thread got me thinking about something I've been wanting to ask the board for a while.  Does anyone have any advice or knowledge on what is considered a good machine in regards to MRI and CT scanners.  Going forward I'm going to be moving my scan location from a major medical facility to a local facility and I'm a little concerned about the capabilities of the new facility.  What I should be looking for as far as capablities?  Thanks if anyone has any info.




Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 11/30/2015 - 10:12pm
Replies by: katie1, Anonymous, momof4boys, Bubbles, mrsaxde

Anyone do ippi for adjuvant care with good results. If so what dosage. It's either interferon (which I'm like ehh) or yervoy since it's approved stage 3.

Login or register to post replies.

Scooby123's picture
Replies 7
Last reply 11/30/2015 - 8:26pm

Hi all, I had a MRI on my brain with no contrast, I thought at the time it's always been with contrast. My nurse called and said my scans 3 weeks ago stable . I had MRI brain without contrast and CT body. I had a call today from my hospital that my consultant wanted another MRI brain with contrast. I am now worrying hoping it just he wanted it with contrast last time and they did not do that. The worse mets. Wish when they call you they would explain why when all was ok last week. Anyone who had MRI brain has it always been with contrast.


Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 11/30/2015 - 9:57pm
Replies by: Anonymous, Bubbles, Scooby123

Have anyone read about this article? I used to take supplements, curcumin, ip6 inositol, purple mushroom cell forte, vitamine D3.


Any comments, please?



Login or register to post replies.

jenny22's picture
Replies 7
Last reply 11/30/2015 - 7:56pm

Hi all-  I wanted to share and get some thoughts on my recent oncology consults for next steps in treatment...stage 3B, recurrent......

Quick recap-

Diagnosed Sept. 2013- 1.3mm, right neck.....WLE, but no SNB (long story...but couldn't be done).....thought to be node negative, staged 1B...followed with ultrasounds of neck, all ok until 14 months out....Nov. 2014- 2 tiny pea size bumps- intransit mets....move to stage 3B. Had surgically removed....margins "iffy", had 2nd surgery...all clear....

Saw 4 melanoma "experts"....MSK, NYU, UPENN, Rutgers, and Mt. Sinai-  after which I  participated in a vaccine trial.....CDX1401 & Poly-ICLC with or without CDX301.

Now, just shy of 1 year after first recurrence, found new "little bump", confirmed to be recurrence # 2, SCAN confirmed no further spread, so continues to be local recurrence. Again, surgically removed.

Radiation is now recommended to "sterilize the neck area"-  Some of you have written that radiation is not beneficial for melanoma .....having now seen NYU & MSK, and  they both agree that it is good for local control in this case...Cleary reminding me it is only for local recurrence, with no systemic benefit.  Since it keeps coming back in the same place they agree this makes sense....There were varying opinions on how to deliver the radiation, which was interesting.  As of now I will start the week after XMAS.

The real question though is on the systemic treatment. I know this can be an interesting topic here.....

Stage 3b, node negative, 2 recurrences- Seems pretty high risk to me-

so what to do?

Neither MSK nor NYU wants to give me IPI (at the newly approved10mg/kg).  Point of interest- 2 days after the LAST vaccine injection i developed diarrhrea which lasted for several months, ending with a colonoscopy, confiming "microscopic colitis"....based on this my Doc (PAVLICK) is REALLY against giving me ipi now.

MSK doesn't have anything to offer than IPI. which he said he would give me if I REALLY wanted it, (but is "disinclined" to offer that)...

NYU- Dr. Pavlick is suggesting i do  one year of Leukine-  I have of course done tons of reading and cant find anything particulary positive about the use of leukine in this setting.

We always tell newbies on this board to make sure they are seeing a Melanoma specialist, who only sees melanoma ALL DAY LONG.....that is exactly waht Dr. Pavlick is...many on this board know and love I do.

So not sure what to do.....looking for PDI trial but haven't see much, and not even any data yet to suggest PDI given alone in the adjuvant setting has any merit...

For all of you out there making similar decisions, in the hopes of not progressing to Stage IV......I'd welcome some opinions.....


Thanks and best,



Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 11/30/2015 - 6:22pm
Replies by: CHD, Anonymous, geriakt, DZnDef, casagrayson, JenSam

I'm taking this dx really hard. I'm thinking of going to the doctor for some anxiety medication to level me out. I feel if I don't get help this anxiety will hurt me emotional long term and my immune system. Is there anyone else that takes anti anxiety or anti depression pills. I tried meditation and breathing but that had not helped.


Login or register to post replies.

Cmako44's picture
Replies 10
Last reply 11/30/2015 - 8:13pm

Hello. I am writing this pleading for help. My 31 year old sister was recently diagnosed with Metastic Melanoma in her spine, ribs, pelvis and femur. I am her younger brother but am hoping to get any kind of support, stories/answers. We are going this week to get a second opinion at a top melanoma specialist in Chicago but I have been reading stories on the internet basically saying that this disease at this stage is almost always a death sentence.

Please bare with me as I am not very educated on this and my brain is a bit foggy as I have had severe anxiety and am taking this hard right now. We are awaiting to find out if my sister has the Braf mutation as I am told if she does it increases her chances of survival. We will do anything and everything we can (my sister and family) to fight this disease. Does anyone have stories of hope or anything they might be able to tell me to get through this. I won't get into how close I am with my sister but just amagine your everything in this world. That's what she means to me.

Also, does anyone know of any clinical trials that have given NED to patients with this form of Metastic melanoma to the spine, ribs, pelvis and femur areas. My family and I are so scared I can only imagine what she is going through. I can't believe I'm pleading on the Internet like this but Someone, if your out there, please help.



Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 11/30/2015 - 8:36am

Hello!    I have noticed a patch near my collar bone; lymph node location, that is slightly raised and discoloured.    When I run my hand over it it is swollen to some degree.     I am a stage 3 melanoma patient and had completed a year of Interferon July 2013.    Is this anything I should be concerned about or simply wait another 3-4 weeks and see if it disappears?  I don't like worrying about these things but admit to feeling a little worried when certain things present.   Thank you for your help.    Take care.


Stage 3a

Login or register to post replies.

AllysonRuth's picture
Replies 5
Last reply 11/30/2015 - 6:56pm

After searching for hours and hours, I can't find any information on the way Keytruda impacts your blood work.  What has been your experience?  Do any of you know?

I am a newly diagnosed Stage IV melanoma groupie.  I got really sick with pneumonia and the doctors found a tumor the size of a tennis ball in my left lung.  I also have brain mets.  I have undergone Gamma Knife and lung radiation and I have had my third dose of Keytruda.  I will be scanned just after Christmas to see if the Keytruda is working.  I am being treated at the Mayo Clinic.  I had a small melanoma taken off my back in 2006, I guess some of its ugly cells decided to stay around.

Anyway, since the beginning my blood work has shown I am anemic.  The docs thought I had internal bleeding, so I have had colonoscopy, upper endoscopy and I just did the PillCam test this last week and awaiting results.  They are trying to find out why I am anemic with no improvement, even after two IV iron injections.  In addition to being anemic, this last visit I was diagnosed with leucopenia with lymphopenia and normal English I think it means my white blood cell count is low.  It has been low for months and all the different types of white blood cells are low.  

So, have any of you had this?  Isn't the point of Keytruda to boost my immune system and my T-cells?  Did the rest of you see your white blood cell count go up or down while on a PD-1?  

A bit about me...I am a 41 year-old mother of five living in Bettendorf, Iowa.  I worked part-time as a divorce lawyer until I had baby number 3 and then after that I have stayed home full time.  (Maybe the melanoma is payment for me breaking up families!)  My children are 14, 12, 9, 4 and 3 years old.  This melanoma has rocked all of our world.  It has been so difficult, which you all understand.  Thank you for understanding.

I appreciate any of your thoughts and insights.


P.S.  There are always references to tumor burden, yet I can never figure out what it means.  What constitutes high tumor burden compared to low tumor burden?  Is it size, number of tumors, etc?  


Login or register to post replies.

Anonymous's picture
Replies 19
Last reply 12/1/2015 - 12:36am

I just finished my first surgery(clnd) and will be transferring doctors. Is there a certain time limit where you have to start a drug or the insurance will deny you? (Interferon or yervoy seems like my only options for stage 3) Is there a timetable on how fast you have to start systemic treatment after a clnd of armpit?

Thank you

Login or register to post replies.

arthurjedi007's picture
Replies 10
Last reply 11/30/2015 - 4:08pm

I'm currently taking OxyContin in its 10mg 12 hour release pill. Plus oxycodone in its 5mg breakthrough pain pill. The doc says the only thing they can do is up the dosage. I was on some generic morphine 12 hour release pill before the OxyContin. Also sometimes the heating pad still helps.

Last winter I was on oxycodone. And some type of morphine breakthrough pain pill. Plus a couple strengths of fentanyl patch. Plus some awful nerve pain pill. But the radiation that almost did me in got me better so i wasn't on anything until a couple months ago.

The pain I deal with is a lot of spots. Although lots of pain it isn't the sharp pain like last winter.

The worst I would say is my left hip. There is even a small bulge on the side of the hip. Well I say small. About the size of my palm and about 1/8 to 1/4 inch height. When I press on it feels like bone. I dont have scans yet to prove it thats in a couple weeks as the regular scan but I suspect the tumors there have deteriorated the bones. The pain though is more the rest of the hip.

Also pain in the left upper leg and knee and left lower leg and the middle bottom of my left foot. The right leg has similar issue but not to that extent.

The second worse pain is my lower back and tail bone.

Then as we go up my spine I would think since over half the t10 is gone that would be pain but it isn't. Only if I'm out and about in a wheel chair or sit and sleep somewhere besides home.

There's also a huge pain in my lower left back ribs where they told me is a tumor going into my chest cavity. But it doesn't hurt all the time. Mom says she feels a bulge there now that used to not be there a month ago.

Then of course is the huge hunchback of Norte dame tumor of my left shoulder. But it only hurts around the edges and deep in the center.

Then once in awhile there is pain with the tumor on my head that goes through the skull pressing on my brain.

Other than those spots I don't really have pains much elsewhere except sometimes here and there.

I was wondering if there is something better for pain? So far though the only side affects to the pain pills is some tiredness. Also some constipation so I have to take mirilax daily.

As you can imagine it is almost impossible to walk. When the pain pills are working I can manage about 5 minutes. That's up from 2 minutes a couple weeks or so ago. But I've gotten unsteady so instead of walking around the house I go around the dining room table in one direction then switch to the other. Keeping one hand on my cane and the other on the table. Just started that yesterday but seems to work pretty good.

So I dunno if there is something better for pain. I know across the river they approved medical marijuana but there's no way I could smoke something. Plus I have no idea of the side affects. I've heard something about cannibus oil but I dunno if that helps with pain and what it's side affects are or where to get it. Sooo is there anything better than what I'm doing?

As far as treatment they got me on keytruda and abraxane. I lost my hair, some tiredness and mild stomach issues but otherwise ok with it. I get dose 3 Monday and the week of 7th go back to Houston for scans and see the doc. At least I'm going to try to make it. The trip is going to be very rough on me. Also I have no idea what will happen there. I know after first dose my ldh dropped 25% so I'm hoping that continues.


Login or register to post replies.

gregor913's picture
Replies 6
Last reply 11/28/2015 - 7:43pm

Hi I'm currently 3b stage. I was just wondering how clinical trials work. I have hmo insurance.

1. Do you have to go to the hospital where the trial is at etc travel.

2. Who pays for the trial. Is there any cost for us.

3. Does my insurance have anything to do with the trial.

4. Does anyone know of any adjuvant trial options I can enter. I'm in the Chicago area.

5. Excluding clinical trial. If I take a drug like ipi since it's approved now. Will the drug be covered in the future if I need to take it again.

Thanks Greg

Login or register to post replies.

Anonymous's picture
Replies 13
Last reply 11/30/2015 - 11:09am

Hi Everyone,

In October 2013 I was diagnosed with melanoma stage 4 with many metastases in my liver and both ovaries. I started to participate in clinical trials ( Nivo/Yervoy). Everything went really well, without any side effects and my CT scans were showing that liver metastases are not spreading and one on the ovary is getting smaller. Although there was a small tumor in my spine, the doctors told me there was nothing to worry - the treatment is doing its job. 

In April 2015 i was rushed to ER with severe pain in my right side of the hip and the whole leg. CT didnt show anything. I was on strong painkillers for two months and begged to do MRI. MRI showed I had new tumor on my hip bone. I was withdrawn from the trial and told I was getting Ipi. In July I had a radiation on my hip and spine tumors. At the same time headaches started and there was constant noise in my left ear. MRI of the brain showed one tiny metastasis which was  treated by cyber knife and I also got treatment for vertigo. Then my doc decided to put me on Keytruda.

At the end of July my headahces got worse, I started to have double vision, nausea, lost control of my left arm and almost couldnt walk. The urgent MRI of the brain was performed and my oncologist told me I had leptomeningeal metastases . I stopped Keytruda and switched to Tafinlar/ Mekinist combination which stabilized my situation.

My oncologist refused to do lumbur puncture saying there is no point in it.  I was told this is terminal complication and there is no cure. When Tafinalr/ Mekinist combination stops working, there is nothing they can do. 

I live in Israel and the medicine here is considered to be one of the best in the world. But I feel that my doctors gave up on me. I read that many patients with leptomeningeal complication in US are getting brain radiation and spinal chemo and other treatments. I am 31 year old woman, my body is still fighting. I dont understand why my oncologist doesnt want to do anything. I feel very desperate and depressed since the diagnosis.  Because of the high fevers and other side effects I had to quit my job and now the only thing I am doing is looking for any treatment in the internet. But there is almost no information on leptomeningeal metastases in melanoma.

Please let me know are there any options? Can I ask my doc to go back to Keytruda? Is there anyone with the same diagnosis? please help me, I am very desperate



Login or register to post replies.

Scooby123's picture
Replies 2
Last reply 11/28/2015 - 2:36am

Hi all,

I contact my nurse due to been in pain a lot round my ribs and side area. Not like the pain I get from my arthuritus which I have in my back and neck. I had scans done two weeks ago results next week. But she spoke to my consultant and called me today with scans stable still so not sure why in pain they are checking me next week. So was so pleased all stable with scans so next week when go least I will not have that sickening anxious feeling waiting for results of scans.

thanks for all your support 


Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 11/29/2015 - 10:32pm
Replies by: CHD, Anonymous, Janner

Can somebody please explain to me ulceration. I mean if it has spread to your lymph nodes why is it worse or even significant. Are the cells more aggressive? Are the tumors always worse? I know it carries a worse prognosis but why? Been looking on the internet and cant find out the reason. The only thing I found was a study that said ulcerated melanomas tend to have a higher mitotic rate.  Anyone know?

Login or register to post replies.